Ryan's story

Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.

However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy which is on-going. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.

Friday, 21 December 2012

There's no place like home


Apologies for taking so long to tell you officially that WE ARE HOME! We found out on Monday morning after a blood count that we could leave that day! I can honestly say that I felt sick waiting for the blood results as so much depended on them that day and there was much to do before we could leave.

We got told we could go home at about 10.30 but wanted to say goodbye to Jamie's parents and Ryan also wanted to say goodbye to 'his nurses' in the BMT unit.  (Jamie has started to do really well since we left which is just wonderful news) Then we packed the remainder of our things and got into the car.  Most of the snow had melted by Monday but apart from a bit of heavy rain and traffic through Antwerp the journey was hassle free and was door to door in 12-13 hours.  I seriously don't know what we would do without our iPhones! In the car I was able to book the Eurotunnel and then arrange a Tesco shop for the next morning.  

Unfortunately I hadn't envisaged our fridge freezer deciding to pack up!  The food arrived and we managed to cram most of it into the old fridge freezer in the garage!  You don't realise how often you go to the fridge until you have to put your shoes on and leave the house to get to it!  The new fridge freezer arrived yesterday but typically had faulty/missing parts and so a second new one is coming today.  We have already been into hospital for a platelet transfusion - which turned out to be great timing as we got to meet Neil Clark from Exeter Chiefs who has chosen Ryan as one his nominated charities in his testimonial year.  The Chiefs had been visiting the hospital distributing gifts to the children in hospital. Ryan really enjoyed being back in Bramble and seeing his nurses, he really does feel quite at home there, which is great.  

Ryan is loving being at home, he understands that he can't see many friends but he can see a couple.  Most of all though it is just great to be at home.  The tree is up and there are already a couple presents under it and Ryan is one happy excited boy.

No comments:

Post a Comment